How have you coped over the past few months of COVID-19? Please let us know

Patients and caregivers/supporters survey on care during the COVID-19 pandemic

MDS UK has teamed up with the NCRI MDS subgroup (National Cancer Research Institute), the UK MDS Forum (National MDS clinical experts group), and created a survey for MDS, CMML and AML patients and caregivers.

What does this survey cover?

This national survey is about

  • your perspective and experience of the COVID-19 pandemic generally
  • the clinical care and support you received
  • the information you had access to
  • treatment of COVID-19, if applicable

How will this data be used?

The data collected will inform clinical staff about any beneficial changes to practice they can take forward to improve the care of MDS and AML patients as well as understand what barriers and difficulties patients came across during this period.

We also hope to pass on some of this data to PHE (Public Health England), to also improve the way they provide information and services to patients and families.

We will publish results on our website as well, and use the information to improve our services to members too.

Confidentiality and GDPR

This survey is set up to be completed totally anonymously, in line with GDPR regulations for this type of work.

MDS UK members will be sent a link, but it will not be possible to trace back answers to individuals.

The link can only be used once per device.

Other surveys on COVID-19

You may have completed other surveys on the topic of Covid-19, for other organisations, but we kindly ask you to complete this one too, as it is the only survey fully dedicated to MDS, and prepared by the team of clinical experts in MDS and the NCRI sub-group on MDS.

Your MDS clinicians may also forward you a link to this particular survey.

It does not matter which link you end up using, as data will be collected together.

How long does it take to complete it?

It may take you up to 30minutes to answer all questions.

Some questions can be skipped.

We thank you for taking this time to provide these very important answers, to help us help you.

Technical Queries?

Please email admin1@mdspatientsupport.org.uk

MDS UK team

Many thanks to the clinical staff and MDS UK team involved in this survey:

NHS staff: Dr P Krishnamurthy, Dr S Killick, Nurses J Hayden and M Kenyon, Dr J Chadwick, Analyst A Jackson

MDS UK staff and volunteers: C Dugmore, C Richards, IT expert E Fuste, S Wintrich, C McGovern

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